By Susan Watts and Mags Gavan
Blood supplies were contaminated
Evidence UK scientists ignored warnings that could have prevented people with haemophilia being given contaminated blood has been seen by the BBC.
The Newsnight programme has seen documents suggesting experts were aware of the threat at an early stage, but transfusions were not stopped.
In the 1970s and 1980s, 4,500 UK haemophilia patients were exposed to lethal viruses in blood products.
Two thousand have since died of either Hepatitis C or HIV.
Successive governments have resisted attempts to hold a full inquiry. As a result campaigners have organised a private inquiry which will hold its first hearing on Wednesday.
It is generally accepted that many people with haemophilia became infected from supplies of the clotting agent Factor 8 from abroad.
Unbeknown to them at the time, much of the plasma used to make Factor 8 came from donors like prison inmates in the US.
These prisoners were allowed to sell their blood even though there were questions over their health.
Lack of knowledge
Successive governments have said politicians, civil servants and doctors simply did not know enough about the dangers of Factor 8 concentrates to stop using them in time.
It has been difficult for those affected to challenge that, as many official documents have mysteriously disappeared.
The government claimed some were shredded, and it has refused to release others on grounds of "commercial confidentiality".
Relatives of some of those who have died have managed to get hold of some of these documents over the course of many years.
They show many knew a lot more, much earlier than has ever been admitted.
One of the most shocking is a letter from the head of Britain's public health surveillance centre warning the Department of Health about the risk of Aids from Factor 8 after Britain's first case in Cardiff.
It calls for all US imports to be banned.
This was May 1983, before most people with haemophilia in the UK became infected with HIV.
The letter says: "I have reviewed the literature and come to the conclusion that all blood products made from blood donated in the USA after 1978 should be withdrawn from use until the risk of Aids transmission by these products has been clarified."
Despite this warning, Factor 8 imports continued to be used.
Even when safer heat-treated versions came along, it was left to local physicians to decide whether to use them.
Many apparently chose to use up non heat-treated material first.
Some people with haemophilia have told us they are convinced, after studying the paperwork, that they were secretly tested, without their knowledge or consent.
Blood was taken from US prisoners
And in some cases, even when those tests showed they were HIV positive, the patients themselves were not told for several years.
One of those was Robert Mackie. At the time, he had only mild haemophilia, and did not even need to be on Factor 8.
He said he would never have taken it if doctors had told him about the risks.
"They are saying they didn't know about the Aids virus.
"I'm sorry. By June 1983 when the European Commissioners put out a warning that all haemophiliacs in Europe, including the UK were to be informed of the risk of Aids. Why weren't we warned of the risks?"
Mr Mackie discovered by accident that his doctor, Professor Christopher Ludlam of the Edinburgh Royal Infirmary, was doing a lot more than looking after patients.
In a medical newsletter in 1990, Professor Ludlam described a unique group of patients in Scotland that had formed the basis of several years of important research he had published on Aids.
When Mr Mackie saw this, he examined his records.
He has discovered that although he was infected in 1984, he was not told until 1987.
And strangely, the words "Aids study" were clearly written in his medical notes before he was infected.
Mr Mackie is convinced he was part of scientific attempts to understand the virus behind Aids, but he was not told.
He has discovered that in April 1983 - before he was infected - Aids specialists at one of the US's top medical institutions wrote in the Lancet about how valuable it would be to locate a group of haemophilia patients in a country not yet affected by Aids.
That was the position that the UK was in at the time, and Professor Ludlam offered up his patients in response.
We approached Professor Ludlam him but he said he had a duty of confidentiality to individual patients - even though Mr Mackie himself wants answers.
He declined to speak because of a potential investigation by the General Medical Council.
There is intense pressure now on the privately-funded inquiry that starts tomorrow, and it has got heavyweight backing.
It is being chaired by the former solicitor general Lord Archer of Sandwell.
Several former health ministers have already said they will appear, and haemophilia patients hope it may convince the government to release any documents it is still sitting on.
The Department of Health said in a statement it had been open and transparent on the issue in the past.
It said it was reviewing all documents on hepatitis C from 1970-1985, including some which had previously been considered missing from a firm of private solicitors.
"Reference to HIV is made in some of the documents, and we plan to release as many of these documents as possible."